I did a dumb thing, went into total knee replacement surgery without being on CH prophylaxis (verapamil). I have been starting bid verapamil whenever a cluster episode begins. Then after 4 weeks I drop he verapamil. It's a plan that's been working very well for me. I've been so comfortable that I did not appreciate the threat presented by having to be on narcotics for pain management. Not only did the clusters start up, but abortive Rx tended to cancel out the positive effects of the percocet on my operative leg. Of course not one of the medical folks I dealt with in this process gets that narcotics can cause CH. None of this causes even one ripple on their radar screen -- a reminder that we must always advocate for ourselves.

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...narcotics can cause CH.

Sorry, I've never heard of that either.

Rebound headaches while in cycle, yes, along with a whole host of other problems, not the least of which is addiction. But CAUSE them? Sorry. Never heard of that.

I'm wondering if you're generalizing from THC as a trigger to narcotics as a cause? I suppose some could trigger a hit, although I don't think you meant "cause." Interesting thought, though. Blessings! lance

"Cause" was definitely the wrong word. "Trigger" is better. Maybe it's the vasodilating effect of the narcotics (similar to alcohol). I was having a headache pretty steadily during my hospital stay and finally they settled into a cluster pattern. The bid verapamil is starting to get things back in order again. Maybe it's my own idiosyncrasy.

One of the more annoying aspects of CH...seems just a whisker different for everyone. Narcotics have never affected my cycles good or bad. (Not that I use them THAT often! ;))

Joe

You are so right, Guiseppi. We each have our idiosyncrasies. Neuro upped my dose from bid to tid.

I had to jump in because Narcotics ALWAYS bring on my CH.
Now that you know just be prepared. Whenever I know that I am going to have to take narcotics I always ask for the lowest dosage posssible, but I also let my nero know so he is prepared to help me fight the battle that comes after.

Kind of funny when I start to talk about the problem the first thing they think is that I am asking for stronger meds or more I get really funny looks from Dr. and nurses  :o

My TKR was the most painless surgery I've ever had. I'm two-years from the surgery and believe that consistent, GENTLE stretching exercises prevented any real discomfort.

My neighbors who stayed quiet and still, with the same surgery, lost function with surprising speed and lost flexibility quickly.

TKR's are different experiences for everyone. I'm one of those like your neighbors who didn't do the movements and therefore didn't expand range of motion. But I was told that this isn't lack of effort. Some people get good movement without pushing it while others have a lot of pain (me). Compound that with CH!! Appreciate that someone else chimed in on narcotics as triggers. Narcotics are vasodilators so it makes sense.

Update: Still on percocet q 4 hours round the clock, and still having a cluster each night. I have had almost no CH action for three years because of prophylactic verapamil. Now even after upping verapamil dose I'm needing an abortive. Fortunately my annual neuro checkup is scheduled for next Monday and we can devise a strategy. Just in case no one realized this, clusters SUCK.

Just in case no one realized this, clusters SUCK.

yeah....that's the truth.... :'(

Joe

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the threat presented by having to be on narcotics for pain management. Not only did the clusters start up, but abortive Rx tended to cancel out the positive effects of the percocet on my operative leg. Of course not one of the medical folks I dealt with in this process gets that narcotics can cause CH.

I've been saying this (above) around here for 12 years Not that they're the cause...but a re-bound/trigger.

I'm sorry you had to learn the hard way, but I totally empathize with you being in pain from surgery and needing something short-term.

O2 won't negate the Percocet.  Ask for it for an abortive, but then that is all the abortive I will use now anyway.  Effective, relatively inexpensive, and no side effects.

Jerry

I had hip replacement before the holidays and am on pain medications for that. Yes, my clusters have kicked into high gear. My doc says that it's probably just the surgery but I think it's the pain meds. I had the same experience with the abortive meds - the Zomig that my GP gave me did stop the clusters that night, but I was crying in the middle of the night because my leg pain was so bad.

I've been afraid to take the Zomig since, and have been sleeping with frozen water balloons wrapped in a towel next to my bed each night. When the CH's wake me up (usually 4 or 5 times a night) I stick one of those ice balloons on my cheek until it subsides.

I'm hoping that going off the pain meds in a week or two will help the CH's to calm down.

Saw my neuro yesterday. Basically has upped my verapamil dose. Have imitrex nasal spray as an abortive. If I don't get relief soon will get the O2 set up in here.

Stel, so you know the double whammy. Interesting how when a cluster hits you don't notice the ortho pain. Hips come along faster so hopefully you can get off the narcotics and be rid of the clusters.

Last night nothing seemed to abort and finally it was an ice pack that did the trick.

I've come to the conclusion that cluster syndrome and percocet are partners in crime.

Oxygen coming today. Hope it works. Surprisingly, the imitrex stopped working; the cold pack failed; I actually aborted with Excedrin migraine this a.m. Not sure there's a verapamil dosage that will outrun the percocet. I already have a mild heart block and get a little nervous with high verapamil dosage.

Unfortunately, narcotics block the desirable effects of a LOT of other meds.

I'm now off of the narcotics for the post-op pain and recovery, and what do you know, my cluster headaches have, for the last three days anyway, not come back.

Still sleeping with that frozen water balloon wrapped in a dishtowel next to the bed, however. Because the worst thing is to be awakened by the CH pain and have to walk down to the kitchen to get some ice!  :-X